First, if you hadn’t figured it out already, my last post was not as much about chemo brain itself as it is me working out some of the things cancer is putting into perspective for me. This one will tell you more about what chemo brain is and how it’s showing up for me.
The American Cancer Society has a rather vague (IMO) definition for chemo brain. The one I like best so far, because it’s way more inclusive of the symptoms, is the definition from Mayo Clinic. This article from the National Cancer Institute, the government research office, has more information about the various studies being conducted to see which therapies have a higher incidence of chemo brain and what studies are being done to counteract it.
Let’s be clear – the whole point of chemotherapy is to kill cancer cells. How it does this is to target cells that grow more quickly than others. Chemo doesn’t discriminate to target only cancer cells. It kills skin, blood, brain, liver, and other cells that are also quickly dividing. Your skin cells reproduce about once a week, blood replaces itself every 4 months, and there are some cells in your body that only reproduce every 7 years. It only makes sense that the cells in your brain that are doing a lot of active work to learn and store new things would be targeted by chemotherapy. During the week after chemo, I take an injection every day for 7 days to help build up my white blood cells to prevent infections. If they could figure this out, why isn’t there something more we can be doing to help our brains recover?
Radiation therapy does much the same as chemo except that it alters cell DNA. Like chemo, it doesn’t know the difference between what’s cancer and what isn’t, either. How this minimizes damage to “healthy” cells is how the radiation is targeted to various parts of the body. For me, it will be my chest and armpit where the cancerous lymph nodes are.
While the folks who study this stuff seem to think it’s the whole treatment package that causes these issues, I’m here to say it’s not. It’s just the chemo, and for me, just the AC chemo. So far. And if this is what’s happening now, after only 2 months, it’s not a stretch to understand that I’m not at all happy about this as I look down the road at at least another 8 months of chemo before this part of my cancer adventure is over for me.
Before my cancer diagnosis, I was on the road and not feeling myself, but not enough not myself to be too concerned. In hindsight, I should have been more concerned. I wasn’t because whatever was going on wasn’t interfering with my ability to function during the week while I was working – I worked some evenings and late nights and went to bed early on others. Not necessarily abnormal for me.
When I got my diagnosis, I also found out I had no iron. Not just low iron, but like next to none. There are a number of measures in your blood work that tell your doctor how much iron is in your blood and how effective your blood cells are at doing their job. Two that jumped out at me in that first blood test result were my serum ferritin level, which was 4 ng/mL. Normal is 10-205 ng/mL and my iron saturation (%), which was also 4 when normal is 15-50%. So… severely anemic at the time, no? A month later, after taking double doses of iron, those numbers were back well into the normal range, and all the issues that should have been related to being anemic that weren’t there when I was anemic started popping up after my iron went up.
What am I trying to say? Well, when I had no iron and was chronically tired, I was still able to function like I always had. I was doing a lot of complex tasks, multitasking and not making mistakes. I wasn’t forgetting what tasks I’d done or needed to do next. I was able to focus on tasks at hand without being any more distracted than normal. Yes, I was tired. Yes, I’d forget the occasional thing, but not like now. The biggest change in my life at this point is that I’ve been given high doses of two powerful chemo drugs.
What’s different now?
- I can’t focus. Depending on where I am in the treatment cycle, I can’t focus to save my life, or toward the end, I can focus for a few minutes.
- My short term memory sucks. I can’t remember what I did 5 minutes ago. I can remember the combination to the bathroom door at the acupuncture office where I haven’t been for 8 months, but I can’t remember where I put my glasses not 5 minutes after I got out of the car.
- I have to keep an actual written list of things I need to do and check them off as I do them. This isn’t, and never has been, me. Outside of maybe an occasional grocery list. Seriously.
- I interchange words. Words that are not remotely related to each other but start with the same letters. Banana can become Band-Aid. Unless someone catches me doing that, I have no idea that I did it.
- Words escape me. I don’t usually have problems accessing my vocabulary. Now? It takes a good 30 seconds to a minute IF I’m going to remember the word. Sometimes they never come.
- I’m having a hell of a time retaining things I’ve read. I’m trying to do some certification training for work. Before I would write down the things I was struggling with and remember that later. Not anymore. This truly sucks. And this piece, I don’t know how to fix or work around.
For someone who relies on a partially idetic memory, which means that I can usually picture the screen you’re on troubleshooting a computer issue, or details of things based on a picture in my head of the web page where I found the fix, this type of cognitive function loss is frustrating. Thinking about spending the next 5-20 years like this is not only scary, but unacceptable to me.
The oncologist and I will be talking about this on Friday. There are drugs coming out of studies at Sloan Kettering. There have to be supplements or enzymes that help. Knowing that pretty much every cancer survivor in the country has had this issue or is still experiencing this issue gives me hope that they’ll figure something out. Treating us like 80 year old dementia patients is no longer good enough.